I was stunned to read that death rates from inflammatory breast cancer (IBC) may be rising because some doctors are not following the standard protocol for treatment.
Inflammatory breast cancer is an aggressive disease. The survival rate for patients who receive just a mastectomy is so dismal that there was a time when IBC patients were sent home and told that they had an inoperable breast cancer.
By the time I was diagnosed in 1998, the situation was better. Doctors had learned that if they did chemotherapy before surgery and then added radiation afterwards, the survival rate improved. The chemotherapy, mastectomy, radiation combination is called trimodality therapy. Using all three had increased the five year survival rate to 40% according to Dr. Susan Love’s Breast Book, 2nd Edition, the only book for laypeople I could find in 1998 that gave any useful information about IBC.
My doctor’s decision to add Taxol, a newer drug, to the standard Adriamycin/Cytoxin raised my chance of survival to about 45%. It wasn’t hard for me to reason that all those stats were based on women diagnosed at least five years before I was. Surely my chances were better. I’m an English major, so I just rounded up to 50% and figured that I had just as good a chance to live as to die.
Shortly after I was in treatment, Herceptin became standard for IBC patients who were Her2 positive, and survival rates improved even more. But IBC remains the deadliest breast cancer, so researchers at The University of Texas MD Anderson Cancer Center decided to find out what treatment combinations work best. Researchers analyzed the data for over 10,000 women who had nonmetastatic IBC between 1998 and 2010.
They found that the percentage of women receiving trimodality therapy varied between 58% and 73% despite the fact that by 1998, it was well known that this method of treatment increased survival rates. Its use peaked at 73% in 2004 and has dropped since then. With trimodality treatment, the five-year survival rate for nonmetastatic IBC is 55% and the ten-year survival rate is 37%. The patients in the study who received surgery plus chemo had a 42.9 five-year survival rate, and the patients who had surgery plus radiation had a 40% five-year survival rate.
The researchers also found other ways in which some women did not receive the standard of care for IBC. About 5% of the women had some form of partial mastectomy instead of a total mastectomy and almost a third did not have a lymph node pathology report.
The treatment guidelines from the National Comprehensive Cancer Network are readily available to doctors. So why would doctors not follow the accepted protocol for treating IBC? Fewer patients early in the study period did not get trimodality therapy when there was less consensus in the medical community on the best treatment. But now with clear treatment guidelines and the internet, there is no excuse for doctors not to know how to treat an IBC patient.
Many of the women who did not receive trimodality therapy were older or had other health conditions that would have made eight to twelve months of aggressive treatment very difficult or even life threatening. Maybe some patients declined radiation because it is a daily commitment that might interfere with work. I am not sure how to interpret the finding that women who lived outside the Midwest were less likely to get trimodality treatment.
Two parts of the study outrage me. First is the finding that the rate of trimodality treatment has dropped since 2004 from 73% to 65.9%. More patients should be receiving the best treatment, not fewer The second is the finding that patients who had lower income or public insurance were less likely to receive the standard of care. Perhaps poor women decide they can’t afford to miss work for medical treatments; maybe doctors at public clinics have too many patients to research the best care for a woman with a rare type of breast cancer. However, it appears that some doctors write off the lives of these women because they can’t pay as much as women with better insurance.
I know that we will never reach 100% of IBC patients choosing trimodality treatment. An 80 year old woman may decide that chemo is just too daunting. A patient who had radiation for a previous cancer may not be a candidate for more radiation after an IBC diagnosis. But we need to turn around the declining rate of trimodality treatment found in this study. We need to remove income and insurance barriers that prevent women from having the best possible medical care.
We also need to educate women and doctors about the standard of care for inflammatory breast cancer. Women need to know that they need chemo first, then a mastectomy followed by radiation. If their doctor suggests any other course of treatment, they need to seek a second opinion to make sure they are following the best course of treatment for them. There will be some situations where trimodality treatment isn’t appropriate, but financial limitations should never be the barrier.
Bath, C. Underuse of Trimodality Treatment for Patients With Inflammatory Breast Cancer Negatively Impacts Survival. The ASCO Post. July 10, 2014, Volume 5, Issue 11. Accessed July 26, 2014 http://www.ascopost.com/issues/july-10,-2014/underuse-of-trimodality-treatment-for-patients-with-inflammatory-breast-cancer-negatively-impacts-survival.aspx.
Love, S. and Lindsey, K. Dr. Susan Love’s Breast Book, 2nd Edition. Reading, MA: Addison Wesley, 1995.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.